The petition
We call on the Centers for Disease Control and Prevention (CDC) to stop using the "empirical" definition[1] (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.

The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition[2]. However the prevalence rates suggest otherwise: the "empirical" definition gives a prevalence rate of 2.54% of the adult population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].

The definition lacks specificity. For example, one research study[6] found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.

Tom Kindlon has set up a petition on the internet
in order to stop CDC to use the new definition of
CFS. At this time there are 636 signatures, and it
would be wonderful if at least 1000 signatures
could be achieved.

Tom Kindlon from Ireland, has written comments to
several research articles relating to the new
definition of CFS made by Reeves et al. 2005, and
adopted by the Centers for Disease Control and
Prevention (CDC) in the USA. Tom Kindlon is one of
the few knowledgeable about the CFS-Reeves
definition.

Leonard Jason from USA has written articles
about how the new CDC CFS definition is a flaw.

The CFS-Reeves definition does not require malaise,
mental fog and post-exertional malaise exceeding 24
h, which make it hard to believe that it has
something to do with ME/CFS as the patients know
it. It does not even require the symtoms to be
chronic, because it does not require the symtoms to
have lasted for at least 6 months. It only looks 1
month back in time.

The CFS-Reeves definition lacks specifcity (&lt;16%).
Already the Fukuda definition was lacking specificity,
and the expected way to go would to have increased
specificity in order to speed up research. With the
CFS-Reeves low specificity, the ME/CFS part will be
dissipated in the stastistical data. As no meaningful
scienfific results will be produced with the "Reeves
illness melange", one can expect that CFS will cease
to be exist as an interesting entity to study.

I think all ME/CFS-patients are hoping for research to
go forward, not to stop up and dissipate because a
TOTALLY FLAWED DEFINITION is accepted and used
by CDC.

Please, help to get more signatures by letting people
know about this petition.

Sign at the bottom of this page. Note: When you are
urged to donate money to the site, you can simply
skip that. Your signature will be registered anyhow.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/

Well done to everyone who have signed and particularly anyone who has encouraged others to sign.

The message below was posted on Co-Cure yesterday (Co-Cure has a public archive so unless people say otherwise, messages can be re-posted). I thought I'd post it anyone as it gives some info on why it's important, etc.
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We're close!

The petition to kill the new Reeves definition for CFS now has 968 signatures - that means just a few more will put us over the top into four digits for the CFSAC meeting on Wednesday. 32 more people. We can do that!

Go sign it now if you haven't. Ask your friends and families to sign it.

http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

What the petition is about: In 2005, with very little fanfare, the CDC researchers on CFS led by Bill Reeves changed the definition they had been using since 1994 (the Fukuda definition). They have replaced it with a definition that greatly resembles the psychiatric one used in England.

What would be the result of that?

Studies that show that we our physical malfunctions are due to "deconditioning" (from staying in bed "playing the sick role") and "cognitive behavior therapy" as the main treatment to offer, that would be the result.

Research on biomarkers and real treatment would be stifled by the CDC's insistence on trying them out with this group of patients, most of whom don't have anything resembling what we have. The CDC would do a quick study and say - there's no evidence that biomarker is useful.

It would hold back research for even MORE decades - and worse, it could lead to cognitive behavior therapy, Prozac, and graded exercise as the only treatments for CFS that private insurance or Medicare would pay for.

IT WOULD BE AN UNMITIGATED DISASTER.

This "new" definition, which was named in the best Orwellian bureaucrateze: "empirical" (as if they had actually studied the symptoms that we have, which they did not), would be an unmitigated disaster for all patients with a diagnosis of CFS - and it wouldn't do much for patients with depression who would find themseles misdiagnosed as having CFS, either.

The reason we didn't hear much about the definition is that Reeves isn't selling the definition to the medical profession - he is selling the questionnaires, and suggesting that they would match the old CFS-Fukuda definition.

But research by Dr. L. Jason suggests otherwise: when he tried the questionnaires out on patients from the Chicago study, he found that they omitted the sickest patients entirely. Even worse, 30 percent (about 1/3) of the so-called "CFS" patients diagnosed using the Reeves questionaire did not have CFS-Fukuda, but did have major depression. As Tom Kindlon has also noted, Reeves would only require one month of "fatigue" for the diagnosis - again, a shift in definition (from six months) that would make it easier for patients with other problems to be diagnosed as having CFS.

The FIRST priority of the new CFSAC MUST BE to stop the distribution of those questionnaires, get rid of all references to the Reeves definition on the CDC's CFS website, and return to both the Fukuda definition and the Fukuda goal of defining subsets using objective measures and biomarkers. (An apology would be nice but I'm not holding my breath.)